基于慢性淋巴细胞白血病（CLL）患者体验的虚拟意见调查中心（VOICE）评估了患者对CLL的了解程度、对诊断和治疗的观点以及未满足的需求。临床医生和患者倡导团体代表共同开发并在2022年3月至12月期间在12个国家进行了调查，并有来自欧洲、拉丁美洲、美国、澳大利亚、埃及和土耳其的377名有过至少一线CLL治疗的患者回答了调查。绝大多数患者（90％；336/374）依赖于他们的医生获取有关CLL和治疗的信息。如果处于高风险，受访者更倾向于口服药物而不是静脉注射（78％；232/296），固定时长治疗而不是直至进展的治疗（69％；185/270），以及门诊治疗而不是住院治疗（91％；257/283）。超过四分之三的受访者（78％；286/368）希望参与治疗决策，但实际上只有少数参与其中（44％；138/313）。COVID-19疫苗广泛可得（97％；273/281），但五分之一（19％；63/331）不知道CLL增加了感染的风险。大多数患者的医生解释了他们的治疗选择（84％；297/355），而90％（271/301）理解了他们的治疗。值得注意的是，超过10％的人在出现心脏问题或心律不齐时仍会继续治疗，而23％的人在患上皮肤癌时会考虑停止治疗。与治疗相关的副作用影响了27％-43％的患者。全球患者人群的这些结果突显了患者对风险群组的了解的不足，以及他们易感染包括COVID在内的感染和常见治疗的副作用。这些知识可以指导临床医生、倡导者和政策制定者针对患者教育项目进行适当的定向。版权所有© 2023美国血液学会。

The Virtual Opinions poll Independent Centered on CLL patients' Experience (VOICE) evaluated patients' knowledge about chronic lymphocytic leukemia (CLL), their perspectives on diagnosis and treatment, and their unmet needs. Clinicians and patient advocacy group representatives developed and distributed the survey from March through December 2022 in 12 countries, and 377 patients with ≥1 line of previous CLL treatment responded from Europe, Latin America, USA, Australia, Egypt, and Turkey. A large majority (90%; 336/374) relied on their physicians for information about CLL and treatment. If at high risk, respondents prefer oral medications to intravenous (78%; 232/296), fixed duration treatment over treatment until progression (69%; 185/270), out-patient over in-patient treatments (91%; 257/283). Over three-fourths of respondents (78%; 286/368) wanted to be involved in treatment decisions, but a minority actually participated (44%; 138/313). COVID-19 vaccinations were widely available (97%; 273/281), but one-fifth (19%; 63/331) were unaware that CLL increases vulnerability to infections. Most patients' physicians explained their treatment options (84%; 297/355), and 90% (271/301) understood their treatment. Notably, >10% would continue treatment normally if they experienced cardiac problems or arrhythmias, while 23% would consider stopping treatment if they developed skin cancer. Treatment-associated side effects impacted 27%-43% of patients. These results in a global patient population highlight gaps in patients' knowledge of risk groups, their susceptibility to infections including COVID, and the side effects of common treatments. Such knowledge can guide the appropriate targeting of patient education initiatives by clinicians, advocates, and policymakers.Copyright © 2023 American Society of Hematology.